SELECT COMMITTEE Dying DignityWith REPORT MARCH 2012 SELECT COMMITTEE Dying DignityWith REPORT MARCH 2012 The collaborators of the Select Committee on Dying with Dignity Secretariat and coordination Anik Laplante Claire Vigneault Research Hélène Bergeron David Boucher Robert Jolicoeur Danielle Simard Linguistic Revision Éliane de Nicolini Graphic Design Manon Paré Page Layout Catherine Houle Communications Jean-Philippe Laprise Debate Broadcasting Christian Croft Joël Guy Security Éric Bédard and his team In this text, the masculine form is used solely to facilitate reading. For more information on the work of the Select Committee on Dying with Dignity, please contact Anik Laplante, Committee Clerk. Édifice Pamphile-Le May 1035, rue des Parlementaires, 3e étage Québec (Québec) G1A 1A3 Telephone: 418 643-2722 Toll free: 1 866 337-8837 Fax: 418 643-0248 Email: [email protected] Photos of witnesses: National Assembly collection Photography: Shutterstock This document is available in the Parliamentary Proceedings section of the National Assembly website: www.assnat.qc.ca. Legal deposit – 2012 Bibliothèque et Archives nationales du Québec ISBN : 978-2-550-64189-6 To read the consultation paper and briefs or to view or listen to the public hearings, visit the National Assembly of Québec website: www.assnat.qc.ca. TABLE OF CONTENTS A WORD FROM THE COMMITTEE CHAIR AND VICE-CHAIR .................................................... 7 THE SIGNATORIES ................................................................................................................................................................................ 9 INTRODUCTION .................................................................................................................................................................................... 11 THE BASIS FOR THE DISCUSSION ............................................................................................................................... 17 What the words mean ............................................................................................................................................................................17 What the law says .......................................................................................................................................................................................19 PART 1 - End-of-life care: an area that needs improvement ....................................................................... 21 Refusal and cessation of treatment: practices that require a better understanding ................... 21 Palliative care: an approach to care to be developed .............................................................................................. 22 Palliative care in Québec ................................................................................................................................................... 23 End-of-Life Palliative Care Policy ............................................................................................................................... 24 Implementation of the Policy ....................................................................................................................... 24 Key improvements needed in the delivery of palliative care ............................................... 25 Access to palliative care ................................................................................................................. 25 Continuity of palliative care ......................................................................................................... 29 Palliative care quality ........................................................................................................................ 29 Raising awareness among stakeholders and the general public of the inescapable nature of death and the palliative care approach ........ 33 The right to palliative care and the obligation of establishments in the health and social services system to make it accessible ............................................................ 35 Palliative sedation: necessary care that needs structure ........................................................................................ 36 Continuous palliative sedation: no consensus on this complex practice ................................ 36 Palliative sedation: a practice that needs structure .................................................................................. 39 Planning end-of-life care in case of incapacity: the challenges ........................................................................ 40 Recognize advance medical directives and make sure they are known ............................... 41 Educate the public on end-of-life planning ..................................................................................................... 44 TABLE OF CONTENTS PART 2 - One more option for end of life ................................................................................................................... 47 Three major changes: social values, medicine and the law ...................................................................................48 The arguments that fuelled our reflection ............................................................................................................................52 Is palliative care the answer to all difficult end-of-life cases? ................................................................53 Why legislate for a small number of people? ................................................................................................. 57 Are end-of-life people able to make an informed request for help to die? ...................... 58 Should universal palliative care precede the debate on euthanasia? ................................... 59 Can euthanasia be considered end-of-life care? ...................................................................................... 60 Is there a significant difference between euthanasia, continuous palliative sedation and the refusal or cessation of treatment?......................... 61 Is respect for life absolute? ............................................................................................................................................. 62 Is dignity intrinsic or subjective? ................................................................................................................................ 63 Would having the option of euthanasia give end-of-life patients a sense of comfort? ............................................................................................................. 64 Does euthanasia have an impact on the family’s grieving? ............................................................... 66 Can having recourse to euthanasia damage the relationship of trust between physician and patient? ............................................................................................................ 68 Can the practice of euthanasia hinder the development of palliative care? .......................69 Can the practice of euthanasia undermine the common good? .................................................. 69 Can the practice of euthanasia lead to abuse? ........................................................................................... 72 Our proposal: medical aid in dying ............................................................................................................................................. 76 Compatibility with changes in social values, medicine and the law .......................................... 76 Taking into account the issues raised .................................................................................................................... 77 TABLE OF CONTENTS Defining and structuring the medical aid in dying option: essential criteria and guidelines ..................................................................................................................................... 79 Who could request medical aid in dying? .............................................................................................. 80 Who would be able to provide medical aid in dying? ................................................................. 82 How should a medical aid in dying request be formulated? ............................................... 83 Which control mechanisms should be in place? .......................................................................... 83 Will advance directives for medical aid in dying be permitted? ........................................ 87 The legal framework required to implement the medical aid in dying option ......... 89 Complex issues that require deeper reflection ...................................................................................................................91 CONCLUSION .......................................................................................................................................................................... 95 LIST OF RECOMMENDATIONS ........................................................................................................................ 97 APPENDIX I - Excerpts from the motion to set up the Select Committee on Dying with Dignity ...................................................................................................103 APPENDIX II - Experts who participated in the special consultation of the Committee on Health and